A Temporary Setback

 "Into each life some rain must fall," wrote Longfellow and for Joy it seems that this year is her monsoon or Hurricane Katrina.  We saw Dr. Sanchez on Thursday the 8th and he delivered the bad news:  The MRA (magnetic resonance angiogram) performed the week before revealed that Joy's aneurysm, the one that had been coiled in early January in an angioplasty procedure, had grown in size and the growth was "not insignificant" according to Dr. Sanchez.

This was the aneurysm (one of two) that the doctors at Loma Linda had initially diagnosed as small and not an imminent threat, but Dr. Sanchez now believes it was the one that had originally bled on Dec. 21st when Joy was stricken.  After they had performed her craniatomy on Dec. 23rd on the larger of the two aneurysms (the one that was clipped), it quickly became apparent to the doctors at Loma Linda that the small aneurysm was a problem, that the reason that it appeared small originally was because it was the aneurysm that had bled into her brain, and may have caused her stroke.  On January 4th, a Loma Linda physician named Dr. Jacobsen performed the angioplasty coiling procedure in an attempt to fill it. That coiling attempt has now proved to be a failure,  but Dr. Sanchez says that even under the best of circumstances the coiling procedures over time have a 40% failure rate.  Dr. Jacobsen was the Doctor at Loma Linda that treated Susan and I with the most respect and spent time with us in front of his computer going over the charts and scans in an attempt to explain the procedure.  His office has since followed up to inquire as to Joy's progress.  I thank him for his efforts on Joy's behalf.

The end result is that Joy will have another angioplasty/coiling procedure at some point in the next four weeks.  Dr. Sanchez will also install a stent to reinforce the coiling of the aneurysm.  Although the aneurysm is deep in the back of Joy's brain and consequently difficult to treat,  the procedure has only a 5% chance of complications.  

It was also determined that the growth on Joy's scalp that Dr. Sanchez's assistant Brenda Mann had removed the previous week was the result of a mrsa infection and needed to be treated with antibiotics.  Suspecting as much, Brenda had prescribed the proper antibiotics to treat the infection.  A week later, the wound looked like it was finally healing properly to Dr. Sanchez.  A mrsa infection is still a dangerous infection and will be monitored closely.

I might as well get all the bad news out at once.  During her craniotomy in December, portions of Joy's skull were removed and not replaced, apparently to allow for swelling of the brain if that were to occur post-procedure.  She has deep depressions at her temple and on the side of her head near her right ear that will require patching of the skull plate.  Dr. Sanchez said he will consider doing that surgery after the angioplasty is performed.  So there will likely be another procedure after the one now scheduled. 

I have complete confidence in Dr. Sanchez's ability to successfully perform the angioplasty procedure and anything else he feels is necessary. Everyone I've spoken to about him--nurses, doctors, patients and their families--has said he is a special, talented doctor and my experience with him so far has confirmed that.  Joy is in very good hands.

Dr. Sanchez did say that the angioplasty procedure could affect Joy's recovery and that she may experience some setbacks because of it.  We believe that the danger of the aneurysm bursting again overrules all other considerations and that Joy is strong enough to tolerate the procedure and will resume her recovery in earnest when she is able.

Here is a picture taken on September 8th of Dr. Sanchez, Joy and Joy's nurse/therapist/neighbor Sue Thomas, who has been invaluable to us since Joy returned home in May: 


 

Another picture of Dr. Sanchez and Joy:

Yes, we have hit a rough patch.  But when I consider what befell the country and some of our fellow citizens ten years ago on this day, and what is happening to some of our neighbors in this economy, I consider us lucky.  Joy's prospects for recovery are still good.  Her rate of recovery so far has surprised everyone.  I'm sure she will continue on that journey once we get her fully healed from procedures and reconstructions.  Next Monday, we will interview and Joy will be evaluated at the Scripps Rehabiliation Center in Encinitas.  I believe Joy will benefit greatly from the therapy she receives there. 

I would like to thank my lifelong friends Jim and Marg Simpson for their support and wish Jim a very Happy Birthday on September 13th.  Joy and I have vacationed with Jim and Marg at their place on beautiful St. Croix on a couple of occasions and always had a wonderful time.  They adore Joy and have stayed in touch with us throughout our ordeal.  One of my goals for us is to be able to go back to St. Croix and visit Jim and Marg.  Another is to visit Gary and Lynn Jensen Nagle in Costa Rica, where we vacationed in 2007.    

Here is Longfellow's poem, The Rainy Day, in its entirety: 

The day is cold, and dark, and dreary;

It rains, and the wind is never weary;

The vine still clings to the moldering wall,

But at every gust the dead leaves fall,

And the day is dark and dreary.

My life is cold, and dark, and dreary;

It rains, and the wind is never weary;

My thoughts still cling to the moldering Past,

But the hopes of youth fall thick in the blast

And the days are dark and dreary.

Be still, sad heart! and cease repining;

Behind the clouds is the sun still shining;

Thy fate is the common fate of all,

Into each life some rain must fall,

Some days must be dark and dreary.

It's not that bad, folks!  The reality is that the sun is shining here and it's a gorgeous, temperate day. Joy is out walking with her nurse Crystal and the dogs.  We are blessed with good friends, a loving family, and a wonderful climate.  God bless you all for your continuing concern and expressions of love and support,

Doug

Labor Day, 2011

Joy and her team had some excitement this week.  Last Monday, a fire broke out in Pala.  It was caused by someone knocking down an electrical pole with their vehicle, which ignited the surrounding area.  It started in the flatlands of the Reservation but quickly moved into the surrounding hills and headed north on southerly winds toward our development of Rancho Heights.  It roared up the backside of  Tourmaline Queen mountain, then down again and up the next ridge.  Here's a picture (looking south) of the fire as it crested the Tourmaline Queen peak, about a mile south of the Rancho Heights border:

Photo by Keenan Murray

To the right of the fire on the western slope, you can see the excavated area of the historic Tourmaline Queen mine, which is in itself an interesting story:  

http://www.palagems.com/tourmaline_queen.htm

The Pala Fire was complicated by the simultaneous outbreak of the Wildcat Fire roughly 25 miles away near Ramona.  That fire was more of an imminent danger to homes, so some of the CalFire crew and air support were pulled off our fire to fight it.  This meant inadequate air support to fight the Pala Fire which, because it was spreading and the winds were increasing on a very hot day in the mid-afternoon, led county and state officials to issue a mandatory evacuation order for Rancho Heights.  The sherriff's deputies, loud speakers blaring,  drove up and down through our development ordering us to leave.  We live among a bunch of ruggeds up here who don't like to be issued orders and only a few people, mostly those with horses, felt it necessary to leave as requested.  I was driving up to the highest ridge in Rancho Heights periodically to view the fire with binoculars and saw no imminent danger.  Barring an extreme change in conditions, at the rate it was moving it would have taken at least two days to get to our house. It would also have had to burn past or through 20 or so other houses before it got to us.  However,  Joy's nurse Misty Kent requested she be allowed to take Joy to safety at her house nearby in Temecula and who am I to question the judgement of medical personnel? 

I was reluctant to let Joy leave, because I knew that once she left she'd have a difficult time getting back in, but Misty was insistent, so I let them go.  The fire was somewhat contained a few hours later, and as I predicted, people were not being let back into the area.  Joy's sister Susan was refused entry after returning home from work and decided to go to Misty's house to wait it out with Joy.  A few hours later Susan called after learning that they would let residents back in if they had identification to prove they were residents.  At around 9 pm I met Misty and Joy down at the sheriff's roadblock and they were let back in.  Here's a picture of the fire area the next morning from a slightly higher elevation:

The white stuff is the fog/marine layer that came in overnight and made it easier for the fire fighters who were mopping up. Here's closeup of what the burn area looked like:  

The orange color in the foreground is from the retardant the planes dropped to stop the fire.  The chaparral burns very hot. It doesn't look it, but most of the brush you see is probably 6 to 8 ft. tall and very thick.  

* * *

Joy continues to improve.  She's showing more signs of her old personality, which was independent and assertive.  She's standing up for hours on end, and studies everything.  We are taking longer and longer walks, sometimes over rough terrain.  Her balance is improving, but has a way to go.  We are reducing the amounts she is being fed through her feeding tube and increasing her intake of solid foods, which she really enjoys. Nurse Sue Thomas and Sister Susan have been cooking nutritious meals for her.  She's communicating a little more all the time.  

On Thursday last we went to Scripps Green Hospital for tests and a visit with Dr. Sanchez's assistant Brenda, as he was away in Germany at a wedding.  A piece of metal installed during her craniotomy (a staple?) has not allowed an area of her skin at her hairline to heal properly and she had developed a growth which Brenda removed.  She may need some kind of corrective surgery to allow that area of her scalp to heal properly.  There are also voids in her skull that Dr. Sanchez at our last visit suggested might have been left that way in case her brain started to swell after surgery.  She has a very deep depression at her temple that is an area devoid of skull and potentially dangerous if she was ever hit by something there since her brain is just below the skin.  He hinted we might want to do something about that.   We will see Dr. Sanchez again on this coming Thursday and there will be much to discuss.  

While at the hospital, we had lunch in the cafeteria between lab tests. Sue Thomas and sister Susan were with me caring for Joy.  I sat with Joy while they went through the cafeteria line.  The room was crowded at lunchtime and Joy said something that sounded like, "This is like K-mart,"  which was interesting, since Sue Thomas had taken her into Walmart the previous week for a quick shopping spree in a motorized cart.  

Misty Kent has a neighbor who analyzes and strategizes complicated surgeries for doctors and has a lot of experience with patients like Joy.  He helped Misty get Joy in the car for the ride  home after the fire and his opinion after observing Joy was that she  has a very good chance of a significant recovery and that we should be pushing her to accomplish as much as she can.  I'm hoping that Dr. Sanchez will order an evaluation for her at the Encinitas Rehabililitation Center, which specializes in the rehabilitation of neurological patients.  I'd like to get her in therapy there a few times a week as an outpatient.  We could really use some advice from the experts there on how best to facilitate her recovery.  We've had therapists come and they've been helpful, but I think it's time for a more comprehensive program now that she is beginning to respond to commands and communicate more. 

In each post I have thanked someone who has been instrumental in our path to recovery.  In this post I would like to express my gratitude to Dr. Charles Smith, who saved Joy's life by intervening with the doctors at Loma Linda University Hospital and demanding that she be sent to Scripps Green where his friend and associate Dr. Rene Sanchez-Mejia could care for her.  The doctors at Loma Linda had given up on Joy and were unable to alleviate her acute hydrocephalus problem.  They were ready to ship her to a rest home in some backwater town where she would most certainly have died.  Once Joy was at Scripps Green and recovering, Chuck offered me a room in his and his wife Pat's condo nearby so that I, like him, would not have to drive back and forth between Pala and the hospital every day.   Pat also was gracious enough to drive all the way down to the rehab facility at Carmel Mountain one day with a spare set of keys for me after I had locked myself out of our car.  They are very special people and I am indebted to them. 

The nurses have been putting make-up and earrings on Joy and styling her hair.  She looks wonderful.  Here she is at rest the other day (She's been smiling a lot, but in this case she wouldn't give me a big one):

I will try to post every two weeks or so.   Thanks to everyone who continues to show their love and affection for Joy.  We feel it every day.  

God Bless, 

Doug